Tuesday, November 27, 2012

Meditations on My Stroke

Huh? What reindeer antlers?
Random thoughts about BS (my name for an unexpected little right pontine stroke I had back in October):

1.     I am a completely different person now. I will never be the “old me” again.

2.     I am exactly the same as I was before, so don’t be afraid of me.

3.     Chex Mix and chocolate chip cookies are profoundly healing.

4.  Once upon a time, while I slept, undetected high blood pressure sent a tiny clot through an artery in my brain until the clot blocked blood flow (and oxygen), killing off some circuitry in the pons area of my brain. I woke at 3 a.m. because my hand felt funny, heavy and wobbly. So of course, I went back to sleep. When I finally got up at 6 a.m., my left side didn’t work right. My arm & leg were heavy and wouldn’t do what my brain tried to tell them to do (brush the hair out of my face, pull back the blanket, get up, walk, etc.). You have a window of 3 hours to get to a hospital once a stroke starts, and maybe get the miracle TPA (clot buster) drug that can help minimize damage or even prevent a major stroke. I missed that window. My left side is slowly coming back online, but I know now (admit) that it will be many months before my brain has things fully reconfigured.

5.  TV is good cognitive therapy. For example, “Alaska: the Last Frontier” makes me thankful for grocery stores and summer. “Finding Bigfoot” is an excellent pre-nap sedative. And, if the alien overlords judge us by “Keeping Up with the Kardashians,” our planet is doomed.

6.  I look perfectly fine and healthy on the outside. So to you, it may seem like I’m well now. Or, it may seem like all I do is watch TV, read, or eat chocolate chip cookies. But I want you to know that on the inside, my brain is finding new pathways around the burnt-out wiring in my pons as it tries to reconnect with my left side. My brain is holding my left arm in place to keep it from drifting off into space, away from my body. My brain is keeping my left knee from locking up with every step. My brain is making sure my lazy left chest and rib muscles expand with each breath. My brain is forcing the left side of my throat and vocal folds to keep up when I talk or sing. My brain is keeping my left eye centered and focused. And my brain is simultaneously controlling and monitoring every other function of my body. So believe me…on the inside, I am working harder than I’ve ever worked in my life.

Pontine Stroke
7.  The pons is deep in the center of the brain, at the top of the brainstem. Among other things, it contains nuclei that help control sleep, respiration, swallowing, bladder function, equilibrium, eye movement, facial expressions, and posture. So if you’ve seen me since BS, you know I am a VERY, VERY lucky girl.

8.  A dog or cat (or both) in the lap is effective at lowering blood pressure, and picking cat hair out of your food is good occupational therapy.

9.  The brain accounts for about 20-25% of the human body’s energy use. I’m pretty sure my brain is sucking up more than that right now, which is why for now, I need frequent rest, I often prefer a calm, low-stimulation environment, and I’m learning the art of napping. See #6.

10.  A life-changing illness is just that: life changing. It causes one to re-evaluate everything. It brings things into startling new focus. It shifts and solidifies priorities. It allows one to contemplate mortality. It reveals the true nature of relationships. It helps one to let go. All of these are good things.

11. Dear Self: Please drive a stake through the heart of your inner guilt-ridden, hyper-responsible, overachieving demon. This post-stroke recovery period is NOT an opportunity for you to get a bunch of stuff done. Healing is what you need to get done. Period.

12.  For a while after BS, I needed time to get to know the new ME. I didn’t want to see or talk to people at first. But now I’m comfortable with my post-stroke self, even on my clunkiest days. Now I love to see friends & family. Yes, visits need to be shorter than before—I can go about 2 hours now before I need rest. And yes, I might actually tell you when you need to go. But know that I still love you and will want to see you again.

13.  Some days are better than others. On clunky days, my left side reverts to the wobbly lack of coordination I experienced just after BS. I drop things. I have more trouble walking, and I move much slower. I lose my balance. Having a conversation takes effort and concentration. Deep breathing is work. Little things—like frustration or walking to the kitchen—wear me out. On these days, I rest more. I don’t try to measure my progress. I don’t allow myself to think “setback.” I just let my body be however it is and know that soon, I will have another great day.

14.  I am inspired and motivated by Jill Bolte Taylor (http://www.youtube.com/watch?v=QTrJqmKoveU), Ram Das (http://www.youtube.com/watch?v=b30LSiFVxPM), my friend Cindy Kirkeby, my friend Larry Smith (http://ridewithlarrymovie.com/who-is-larry-smith/), and many others who are far braver than me and who remind me that self-pity is a waste of precious energy.

Memorize this!
15.  Sleep is my new BFF. Sleep truly IS the great healer, something most western medicine doesn’t seem to know. In the hospital, they woke me up every hour or two (throughout the day and night) to ask my birthday or to ask who was president. In many rehab facilities, post-stroke folks are given Ritalin or other stimulants to keep them awake. Or, they’re given antidepressants because someone decided they sleep too much. Then they’re taken to PT or OT on the staff’s schedule, not when the patient feels rested and ready for it. All of this SLOWS the healing process, I’m sure. Jill Bolte Taylor is a neuroscientist who, at age 37, had a massive hemorrhagic stroke. Instead of going to a rehab facility, her mom lived with and took care of her. Taylor credits her mom for giving her the best therapy possible—sleep. Taylor’s mom let her sleep whenever she wanted. Then, when she felt rested enough, her mom would work with her at some small task until Taylor needed to sleep again. Typically, she would sleep 6 hours, work at something for 20 minutes, then go back to sleep another 6 hours, etc. My mom, who sat with me every day after I came home from the hospital, did the same. Some days, we would both take a nice long nap, knit a dishrag, then fall asleep again. Sleep helps the brain catalog and retain things in memory. Sleep helps the brain move things from short-term to long-term memory. After a stroke, sleep gives the brain the rest it needs to process “new” information (re-learn) and to re-route information around destroyed brain tissue. Research at the University of Chicago showed that patients with high blood pressure who had a stroke can decrease their risk of another stroke by increasing the amount of sleep they get.

So what’d’ya say? Let’s all have a nap…sweet dreams…

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